posted
Hi, I recently got an Igenix positive for Lyme and I have had an MS diagnosis for 2+ years. I see a LLMD in 2 weeks, BUT I am having new MS symptoms. I am freaked out! with the new numbness in my foot. My MS flares (4 so far)have always resolved, but I've taken IV solumedrol 3 of the times. Of course, my Neuro doesn't believe in Lyme. And to complicate things, I have a 4 month old baby and haven't gone back on my MS meds (avonex)so I'm feeling guilty about that. Any thoughts? If the numbness gets worse I will get more nervous and I don't know which way to turn.
-------------------- ******************************** Thanks and blessings to all who share themselves to ease the way of others Dx: MS 1/2006; Lyme+ 10/2008; in treatment with great success Posts: 22 | From Columbia Gorge | Registered: Dec 2008
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massman
Unregistered
posted
Chuck that neuro.
Lyme can greatly affect the nervous system so it makes no sense why a specialist would choose not to "believe" in lyme.
I feel that docs should keep exploring but I guess many don't.
I've tested + for Lyme and co-infections. I have numbness in the bottom of both of my feet, routinely; it waxes and wanes.
I have never been diagnosed with MS; I've had a brain MRI, lumbar puncture etc. Lyme and company can definitely cause neuropathy. Of course, looking at all possibilities is important. Good luck with your LLMD. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Normally with this reacurrance of symptoms I would call my Neuro and probably get steroids. After all I've read with lyme, I guess I will wait it out and hope they resolve.
-------------------- ******************************** Thanks and blessings to all who share themselves to ease the way of others Dx: MS 1/2006; Lyme+ 10/2008; in treatment with great success Posts: 22 | From Columbia Gorge | Registered: Dec 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
At least you have a LLMD appointment in 2 weeks. Many people with LD have been misdiagnosed with MS, and other things too.
Good luck to you!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome Firefly..
I like that name!
Massman.. you said.. "Chuck that neuro."
HA! I had to laugh! You sound like someone I know.
Anyhow... Firefly.. I agree with massman...
Toss the neuro in the alligator pit. He has out lived his usefulness. It sounds like he has a bowling ball for a head and an ice block for a heart. You don't need that and my bet is...
Even the Wizard of Oz couldn't fix him!
As for the numbness.... just a thought..
I've had BAD numbness in large areas in the past. VERY BAD!
With proper treatment for the infections.. it has gone away.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Firefly,
I don't know which state you live in but the Columbia Gorge implies Oregon or Washington - maybe Idaho.
There is not one LLMD in Oregon. there is an excellent LL ND who is also an ILADS member, however, and who has precepted with two LLMD/ILADS doctors.
I don't know who will be your LLMD but (if not the LL ND) perhaps you might call that office and get in earlier. PM me if you need the name.
I'd adivise giving up on the neurologist, you need a LL expert and you will not find that in any neurologist if you are in Oregon.
The medical board here does not allow any MD to acknowledge lyme for its full measure. The few who have tried have lost their license and had to leave. And MS gets grant money galore. Between that and the pharmaceutical companies' support for MS doctors do well continuing to ignore chronic stealth infection.
MS symptoms are lyme symptoms, in many cases. I will come back and post a few articles for you.
In the meantime, AVOIDS all steroids (unless you are on them now - and then do not stop cold turkey).
Do NOT let them talk you into a lumbar puncture/spinal tap. I have links to back that all up with ILADS' LLMDS research but am very tired right now and it may take a while to come back with the citations.
And, in the meantime, magnesium, B-6, fish oil and B-vitamins (during the daytime) are you new best friends. Be sure to avoid all artificial sweeteners.
Aspartame/Nutrasweet/Equal can cause MS like symptoms. MSG, too, is to be avoided - in all its names (you can google fo that).
I'm sure you don't smoke or drink alcohol, but just confirming that avoiding those are vital.
Relax and take excellent care. You are on your way to better health.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Here's just one article on why to AVOID STEROIDS - More later woven into the work of Dr. John Burrascano that you will see. He has coined the term "Steroid Disaster" for patients in whom lyme has gotten much worse from the use of steroids.
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada --Lora Mermin, editor
by _John Drulle, M.D.
"Corticosteroids, or steroids as they are commonly called, are very important drugs in a wide variety of medical conditions. They exert an anti-inflammatory effect and suppress the immune system. This may be life saving in some diseases such as asthma and malignancies.
On the other hand, steroids are rarely curative, and are associated with harmful side effects if used for prolonged periods of time. These include bone loss, cataracts, sodium retention, weight gain, abnormal fat distribution and predisposition in other infections.
. . . We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients.
. . . "I have used steroids in Lyme patients, but only in very selected circumstances. In patients who have presented with eye involvement with rapidly deteriorating vision, such as optic neuritis or uveitis, the combination of high dose steroids appears to restore vision more rapidly than by using antibiotics alone. . . .
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the full Savely article, this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Although you already have positive from Igenex you might find information here about coinfections which should also be considered.
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%).
An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity.
MS misdiagnosis happens more often than I'd like to think. The similarities in MS and LD are remarkably the same, here is one of many stories: http://tinyurl.com/39ltql
The Patient as Diagnostician: How the Internet Helped an MS Patient Find Her True Diagnosis - by Ginger Savely, FNP-C
How many of you have surfed the Web to look for a diagnosis to fit the symptoms that you or one of your loved ones is experiencing?
As a nurse practitioner I often see patients who, when dissatisfied with a diagnosis (or lack of diagnosis) given to them by a health care provider, look to the Internet to discover what is really wrong with them.
Many of my colleagues scoff at this behavior, saying that the Internet is the worst thing that has ever happened to health care. They are displeased when patients come in with a probable diagnosis already in mind and present a list of tests they are convinced are needed in order to prove or disprove their conclusion.
The concern of many health care providers is that the information on the Internet is unreliable and that it encourages patients to obsess over symptoms and even to imagine new symptoms in order to fit the criteria necessary for a certain diagnosis. ``A little bit of knowledge is a dangerous thing,'' they often say.
Most of the patients I see have been through the mill when it comes to doctors and testing and have lost their faith in the health care system that has failed them. So, it comes as no surprise to me that these patients have learned to take their health care into their own hands, educating themselves to the point of being able to speak ``medicalese'' like a pro.
Time and time again I have observed that this tendency on the part of patients to become medically educated has been to their advantage, and many a life has been saved or bettered through the process. In my opinion this proactive behavior on the part of patients should be encouraged.
Maria: A Case in Point
Maria lives in Austin, Texas and is a petite, 49 year old lady who appears younger than her age. During our first encounter she explained that she was frustrated and unwilling to accept a recent diagnosis of multiple sclerosis (MS).
She had been experiencing recurrent right-sided facial pain (trigeminal neuralgia) for five years which had led her to consult a neurologist. An MRI brain scan had shown white patches indicative of nerve inflammation.
A spinal tap had revealed unusual proteins consistent with an MS diagnosis, and a recent repeat MRI had shown progression of the disease with increased number and size of the inflammatory lesions. Based on her symptoms and these findings, her neurologist had diagnosed her with MS and advised her to begin immunosuppressive therapy in order to decrease inflammation.
Maria had been researching her symptoms on the Internet, and had become convinced that her problem was actually related to advanced neurologic Lyme disease. She had been unable to convince her neurologist that this might be the case. He felt it was a clear-cut case of MS and was not inclined to consider the possibility of an illness that did not appear to be endemic to central Texas.
To placate her he had ordered a Lyme screening test, the ELISA test, which had come back negative. Because Maria was convinced her problem was due to a bacterial infection, she refused to follow the advice of her neurologist to begin immunosuppressive therapy, fearing that this would affect her ability to fight the infection.
Maria came to me because she had heard of my special interest in the diagnosis and treatment of Lyme disease. I reviewed her medical history and made special note of her report of a tick attachment to her right lower leg six years earlier, followed by a 5 inch bullseye-shaped rash. This had occurred while she was camping in a rural area of central Texas.
Symptoms had started soon afterward. Some of these symptoms were typical of both Lyme disease and MS, such as insomnia, anxiety, confusion, dizziness, weakness, numbness, blood pressure fluctuations, constipation, acid reflux, urinary urgency, and exhaustion.
She was also experiencing symptoms that were typical of Lyme disease but not of MS: joint pain, muscle aches, jaw and tooth pain, ringing in the ears, and a stiff neck. Many classic MS symptoms were missing, such as optic nerve inflammation, double vision, abnormal eye movements, spasticity, muscle atrophy and balance problem.
Her in-office physical exam did not reveal any obvious abnormalities.
I was familiar with a study published by the Texas Department of Health in 1994 that had revealed that over 1% of ticks collected in eight Texas state parks had tested positive for borrelia spirochetes, the corkscrew-shaped causative agents of Lyme disease.
In fact, per the International Lyme and Associated Disease Society (ILADS), borrelia-carrying ticks had been found in every state in the union.
The rash Maria had described on her leg certainly sounded like erythema migrans, the classic ``bullseye'' rash that is diagnostic for Lyme disease. Her negative result on the ELISA screening test that had been ordered by her neurologist didn't impress me; ELISA tests for Lyme borreliosis are notoriously insensitive. There is evidence that the ELISA has a sensitivity of only 30-40% and therefore does not meet the 95% sensitivity criteria necessary for a screening test.
The Western blot is a better test to use for screening. Unfortunately most labs do not report the individual reactive bands on the blot but report only a positive or negative end-result based on the presence of bands relevant for epidemiologic rather than diagnostic criteria.
It is of utmost importance to choose a lab that reports ALL of the positive bands. Diagnosis of a sick patient and qualification for epidemiologic inclusion are two different matters! I chose to use the highly reputable IGeneX Laboratories in Palo Alto, California.
Through IGeneX testing the patient was positive for Lyme both by the Western blot IgM and by antigen captured in the urine. The history, symptoms, and now the lab results were pointing to a diagnosis of late-stage neurologic Lyme disease (neuroborreliosis) rather than MS.
After three months of intravenous (IV) and oral antibiotic treatment, Maria reported several subjective improvements. Her overall fatigue, urinary frequency, and discomfort were lessened. The numbness in her hands and feet was gone, as was her subjective sensation of weakness.
Maria continued to tolerate the treatment well. After six months of IV antibiotics a repeat MRI showed a 25% reduction in inflammatory lesions. She reported overall improvement, with continually decreasing fatigue, malaise, weakness, cognitive problems, and muscle pain. She continues to improve on IV antibiotics.
MS is a progressive disease, and although remissions are common, a reduction in brain inflammation is not. This improvement in the patient's MRI was quite a surprise for the neurologist and served to strengthen my belief that the patient's problem all along had been neuroborreliosis rather than MS.
Because of the many similarities in the two diagnoses, it is extremely important to pay attention to the patient's history and development of symptoms and to know how to test correctly for the presence of borrelia antibodies.
MS is a diagnosis based primarily on subjective symptoms, and according to the CDC, Lyme disease is as well. The previously mentioned MRI and spinal tap findings in this patient were not diagnostic of MS per se, since they are often also present in Lyme patients with neurologic involvement.
When clinicians complain about the incorrect medical information patients come across on the Internet or the tendency for patients to self-diagnose based on this information, they need to look at the bigger picture and realize that the occasional enlightening discovery is well worth the inevitable false alarms.
I continue to support patients who research their symptoms on the Web, believing it empowers them to be proactive about their health care. Sometimes, as was the case with Maria, this kind of patient collaboration can prove to be a life-saver.
See also:
Fritzsche, M. Chronic Lyme Borreliosis at the Root of Multiple Sclerosis: Is a Cure with Antibiotics Attainable? Medical Hypotheses 2005; 64 (3): 438-448.
posted
Thanks so much for all your responses. I really appreciate the support. Yes, my neuro is one of the best MS doctors in Oregon and I felt so comfortable in his care. I understand the politics of Lyme are such that he needs to remain skeptical, but he is so well researched it is frustrating. I am seeing going to see a Lyme doc in WA and fortunately have the support of my Oregon Family Practice doc. I have to thank the many folks in my area with Lyme who are being treated and improving. The local family practice docs can't ignore Lyme anymore. Bottom line is I want a treatment, not a lifetime of uncertainty and symptom management. Thanks!!
-------------------- ******************************** Thanks and blessings to all who share themselves to ease the way of others Dx: MS 1/2006; Lyme+ 10/2008; in treatment with great success Posts: 22 | From Columbia Gorge | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I know all this is a lot to digest. As you already have a LLMD appt. set in a couple weeks, I assume you've already read a great deal about all this.
I'm not sure exactly what so, on the side of caution, I've put a lot here. And, I'm about to add a little more. This is not to frighten you but rather in the spirit of sharing knowledge.
Be sure to ask the LLMD about breast feeding (if you are doing so) and if your baby should be tested, too. Borrelia can be passed to baby but - if so - the doctor should know how to proceed.
and - you said that 3 times before you took Solu-Medrol (methylprednisolone) -
It is absolutely vital that the LLMD knows this as your treatment protocol may need to be adjusted in light of that.
It sounds like you are not taking that now, though. But, if so, never stop suddenly. In such a case, you would call the LLMD's office for advise on how to proceed until your appt.
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You said you are holding off on taking AVONEX (Interferon beta-1a) - again, and especially if this has helped in the past - I'd advise calling the LLMDs office and see if you can get advice for how to proceed at this time.
You might ask about taking garlic tablets - or olive leaf extract - or andrographis - to hold you over (in addition to the support measures I suggested early of magnesium, B-6, fish oil).
Sometimes, low magnesium can cause severe MS-like symptoms and magesium is a great help to the liver to detox toxins. Lyme is a very toxic infection so the liver needs help.
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Best of luck to you. You have a good chance of regaining your health. I so hope that your new LLMD will be excellent.
posted
Breast feeding is a whole other topic! I went back and forth. My Neuro said I could breastfeed for 1 month if I "wanted the experience" then I was to go right back on the Avonex. I chose 3 months, then the Lyme stuff came up and I tested positive. I actually weaned her almost completely. After talking with the LLMD in setting up my appointment he said my daughter had a 50% chance of transmission in utero and an increased chance with breastfeeding. He didn't advise to stop or not. Said it was my choice. He said once I start antibiotics I can breast feed safely, so we decided to keep on with it. We will definitely have the baby tested, my husband is also working on getting tested. Thanks for your thoughts and all the resources!
-------------------- ******************************** Thanks and blessings to all who share themselves to ease the way of others Dx: MS 1/2006; Lyme+ 10/2008; in treatment with great success Posts: 22 | From Columbia Gorge | Registered: Dec 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Firefly, I could be the lady in that article, and also had a diagnosis of MS and a neuro who scoffed at lyme despite a tick bite and EM rash. I knew in my heart I didn't have MS and after researching and finding LymeNet and an LLMD, got proper testing -- not the crappy ELISA the neuro insisted on -- and was CDC positive for lyme, along with having babesia duncani. I was dx'd with late stage neuroborreliosis.
In many respects it is a lot like MS, but a clinician has to be educated enough about lyme to seriously consider it in a differential diagnosis. More often, especially with neurologists, they are outright hostile to the possibility.
I shudder to think where I might be right now had I just blindly trusted my neurologist.
I wish you the very best with your LLMD and hope you'll keep us informed.
Posts: 3193 | From Northern California | Registered: Apr 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Here's the link to the full article by Martz - link posted above was just to an abstract. This gives hope to anyone with neurological disease for which lyme (TBD, or other chronic steatl infection) may be the underlying cause.
ALS Caused by Lyme Disease with Babesia Co-infection
Posted March 15, 2008
After experiencing difficulty speaking during his nightly radio show, Charles McPhee was diagnosed with a bulbar (neck and throat) presentation of ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, on June 23, 2006.
After researching the possible causes of ALS, Charles decided to treat his ALS with a combination of antibiotics (ceftriaxone, Flagyl, azithromycin) and anti-protozoals (Mepron and Malarone). His rationale for using them is based on a recently documented link between ALS, Lyme Disease, and Babesia.
In a paper published October 22, 2006, Dr. David Martz of Colorado Springs, CO, outlined a harrowing journey through ALS... and back. He was diagnosed in April of 2003, and soon was unable to drive, dress himself, or walk.
Over the next few months his health continued to deteriorate rapidly, and he was forced to retire from his medical practice. Eight months later, while bedridden and confined to a wheelchair, he learned from a friend who sent him a newspaper clipping that it was possible he really had been infected with Lyme disease, an infection commonly carried by ticks.
After 6 negative tests for Lyme (late-stage Lyme is notoriously difficult to detect in the human body), an antibiotic-provoked urinary PCR test in December, 2003, finally showed positive for Borrelia Burgdorferi (Bb), the spirochete bacteria that causes Lyme disease.
During a visual scan of his blood, rings around his red blood cells were also detected, indicating a probable co-infection with Babesia microti, a malaria-like protozoa that is estimated to be transmitted in over 60% of Lyme infections.
Based on this new information, Dr. Martz began using a combination of antibiotics and anti-protozoals to treat his ALS. He noticed dramatic improvement in his symptoms.
Within 12 weeks he was walking again without assistance, and in February, 2005, one year after initiating the antibiotic and anti-protozoal treatment, he was declared to be free of motor neuron disease by his neurologist, Steven A. Smith, M.D.
That same month Dr. Martz was fully recovered and once again began treating Chonic Disease sufferers in private practice in Colorado Springs.
* Read the fascinating account of Dr. Martz's recovery from ALS here:
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Another thing to get tested for is chlamydia pnuemonia. There is a link to that an MS. See: www.cpnhelp.org
Antibiotics are used to treat Cpn too. (as well as used to treat lyme)
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Keebler - some of the links you provided don't seem to have copied completely. This is very good information and you worked so hard to gather it here so I thought I should let you know.
I don't know what's breaking them - maybe try putting them through tinyurl.com?
Here are the ones that are broken (I put asterisks by the broken links - it looks like there are 5 broken links total):
MS misdiagnosis happens more often than I'd like to think. The similarities in MS and LD are remarkably the same, here is one of many stories: http://tinyurl.com/39ltql
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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nenet ,
thanks for link info. Sorry. I did not gather that set myself so it will be harder to trace.
I have company coming tomorrow so can't do anything more now.
Sometimes, if the link does not work but you want to see the original piece, if you copy and paste the title and google it, you will find the original link. Searching by author also helps.
I have found that, from time to time, a "tiny url" will become obsolete. Also, sometimes, publications will archive articles and, in the process, the earlier links become inactive.
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Good luck with your continued research. I hope all this works out for you.
There's sooo much to learn about Lyme and MS and the similarities. I too have had a MS diagnosis for years; and from a VERY good neuro here in the Northeast. I also was on Copaxone.
First things first: read all you can about LD. You are in control of your health --learn all you can.
My lyme doc treats LOTS of MSers and he is ok if you decide to go back on Avonex, so don't let that decision make you crazy. Like many of us that are now in lyme treatment after years of treating for MS I wouldn't be surprised if you'd join us.
My journey took a full year to unravel, AND wow, am I glad because I'm feeling better and better.
I do agree: flush your Neuro....no doctor should shrug off anyone questioning their health. And any doctor who is unwilling to learn about Lyme imo isn't worth paying. This disease is too serious to ignore.
Best to you and hang in there. Everyone on lymenet is an Angel and will help you every step of the way.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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